Living with Frontotemporal dementia
A group of brain conditions where the front and side of the brain shrink, causing changes in behavior, personality or language.
Understanding Frontotemporal dementia
Symptoms include marked changes in social behavior and personality, or problems with language. Some people also develop a movement problem, such as parkinsonism or motor neuron disease. There is a strong genetic part to FTD, and family history of dementia or psychiatric conditions is common. It usually starts in adulthood.
Signs & symptoms
GARD doesn't list a separate symptom list. Its summary describes:
- Changes in social behavior and personality
- Socially inappropriate behavior
- Loss of interest or empathy
- Eating too much or putting inedible things in the mouth
- Trouble speaking or understanding speech
- Movement problems (parkinsonism, motor neuron disease)
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include brain and nervous system specialists and genetic specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Cure VCP Disease, Inc., The Association for Frontotemporal Degeneration and CurePSP may keep lists of experts for this condition.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists); Genetic specialists (geneticists)
- Expert care
- Expert lists: Cure VCP Disease, Inc., The Association for Frontotemporal Degeneration, CurePSP
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with Cure VCP Disease, Inc. and other patient organizations
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
The three main genes in familial FTD are MAPT, GRN, and C9orf72. It sometimes follows an autosomal dominant pattern, and the genetic cause can't always be found.
Also known as: dementia, frontotemporal, with or without parkinsonism; frontotemporal dementia with parkinsonism; frontotemporal dementia with parkinsonism-17; frontotemporal lobar degeneration; frontotemporal lobar degeneration with tau inclusions; frontotemporal lobe dementia
Patient organizations
- Cure VCP Disease, Inc.Frontotemporal dementia · United States
- The Association for Frontotemporal DegenerationFrontotemporal dementia · United States
- CurePSPFrontotemporal dementia · United States
- Cure MAPT FTDFrontotemporal dementia · United States
You are more than your diagnosis
Perspectives from people navigating life with Frontotemporal dementia.
Explore research for Frontotemporal dementia
Explore actively recruiting Frontotemporal dementia studies with HealthSpark.
Find actively recruiting studies for Frontotemporal dementia with HealthSpark. Share your city to explore research near you.
- Recruiting studies from ClinicalTrials.gov
- Share your city to look for research near you
- Eligibility is confirmed by the study team
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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